February 11, 2016
Teacher with cystic fibrosis gears up to run Pittsburgh Marathon
This is no small feat when you’re double digits into an early morning workout that could include as many as 20 miles before some Pittsburghers have had their first cup of coffee. It’s an absolutely amazing one when you consider her lungs are in constant battle with the thick, syrupy mucus that’s a hallmark of the cystic fibrosis she was born with 32 years ago.
Or that every time she’s in a group she puts herself at risk for life-threatening infections through cross-contamination.
Getting enough air can prove difficult, so she coughs. So much and so hard at times while she runs that a week before the Elizabeth Borough resident was to compete in her first Pittsburgh Marathon last May she bruised her ribs.
“I was the sickest I’d been in a year,” recalls Mrs. Camic, who teaches chemistry at Bethel Park High School. Her airway was so obstructed, she felt like she was breathing through coffee straws. “In my heart, I didn’t know if I should run.”
Her head was a different matter. She’d gotten so many encouraging messages while training with Pittsburgh’s Run to Cure CF team — during which she raised more than $19,000 for research — that to not lace up for the 26.2-mile race was, well, unimaginable. So despite her family’s reservations, and with coach Audrey Burgoon lining up support along the course, she went for it, knowing she’d labor for every breath as though the wind had been knocked out of her by a punch to the chest.
She was “beyond disappointed” with her time, but she finished, spurred on at the end by her younger brother, Levi, who ran alongside her the last four miles.
“Given how sick I was, it was somewhat miraculous, and I don’t say that about anything I do,” she says. “However, I did not feel that sense of accomplishment, joy and pride that I had experienced in other races and that I used as mental motivation throughout my training. But as you know, you just run the best you can with what you’re given, and I did do that.”
Or, you try again, as she did three weeks later at the Buffalo Marathon — and took 12 minutes off her time. In all, she’s completed 52 races since her first 5K in 2013, all with her doctors’ blessing. She’ll run her second Pittsburgh Marathon on May 1 with a time goal of 4:30 and fundraising goal of a little more than $12,600, bringing her three-year total to $50,000.
For someone with CF to cross the finish line, she says, is therapeutic in more ways than one. First, running is a good form of therapy in that it helps her lungs to clear out the gunk and stay strong. Perhaps more important, it allows her to deal emotionally with her disease.
“It’s a mental thing,” says Mrs. Camic, who logs upward of 30 miles a week. “When I’m out there running, I’m defeating cystic fibrosis,” a genetic condition that worsens with age. Life expectancy is about 38 years.
Mrs. Camic isn’t the first to heal the body and soul through running; there’s something about crushing miles that can make someone who feels bad, mad or sad suddenly feel better. But her resolve — many would call it grit — is something for the record books.
It’s tough enough for any working mother to find the time for marathon training. Mrs. Camic has to work around a schedule that also includes four hours a day of treatment.
Every day at 4 a.m., she straps on a life jacket-like compression vest that vibrates, helping break up the mucus. It runs for 1½ hours. While it’s shaking, she uses a nebulizer to inhale a fine mist of four mucous-thinning medicines into her lungs. Afterward, the equipment has to be cleaned and disinfected.
She also takes “lots and lots of pills,” and when she’s sick, the list grows.
She repeats the process following dinner. If her 5-year-old daughter, Noelle, is awake, they lie together or play games. If not, she watches TV, reads or grades papers. Sometimes she dozes during treatment, and her husband, Ed, takes over.
Depending on the day, her lung function can go up or down anywhere from 10 percent to 20 percent after treatment. Regardless, she never misses a run and also cross-trains with weights and yoga. Even on days when she has a line threaded into a vein in her chest to administer antibiotics, she puts shoe to pavement — She figures she’s logged at least 100 miles with the tip of a catheter taped to her arm. A few weeks after last year’s Buffalo race, for instance, she had to get a line to treat an infection.
“Why not double up and have running be my medicine, too, and get that double boost?” she asks.
As for any runner, sometimes it’s easy, and sometimes two miles feels like 20. What propels her forward, she says, is Noelle. “She’s my motivation to keep going.”
Success, she adds, is even more appealing when the odds are against her. ”The greater the challenge, the greater the feeling of victory.“
Ms. Burgoon, her coach, chalks her success up to a runner’s ability to overcome adversity. “Some people who aren’t athletes look for excuses. She looks for a reason, and performs. Her positive approach to life in ingrained in her.”
Exercise, says Dr. Michael Myerburg of UPMC, who specializes in pulmonary disease, is the perfect treatment for people with CF because it can slow the rate of decline in lung function. In fact it’s so important, that it’s “one of the things we review when we see CF patients at clinic,” he says.
“Breathing heavy is a really good stimulus to clear mucus and keep the lungs clear,” he says. “So we really push exercise with everybody on every visit.”
Although she played soccer in high school and cheered at Bucknell University, Mrs. Camic never thought much about running until three years ago. Like many 20-somethings, she had a lot of weddings on her calendar and wanted a way to get in shape. A friend at school suggested the treadmill; one mile later, she decided to train for a 5K. “I got addicted,” she says. And she’s competitive for her age group, logging a respectable 7:27.33 this past July at the GNC Live Well Liberty Mile.
The stats on CF, Mrs. Camic admits, can be scary. That’s why fundraising for research is so important to her and also why she went public with her story last year; until then, no one but close friends and family knew she was ill.
“I have never wanted special treatment or to be viewed as a sick person.“
Her wish in joining the CF team and sharing her experiences is that she’ll provide hope and encouragement to those affected by the disease. “I want to show them that having a family, a job and a very happy, fulfilling life is possible.”
While researchers have made tremendous progress in the treatment of some CF patients, they’ve not yet been successful with Mrs. Camic’s particular mutation. She could be looking at a lung transplant.
But when she’s running, some of those fears and sadness about the future fade away.
”Focusing on negatives does zero good for me,“ she says, ”so I try to focus only on the positives and those things that I can control. After all, cystic fibrosis or not, no one is guaranteed tomorrow.“